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Luke was born on September 3rd 2013. He was smaller than Wyatt weighing in at 7 pounds 7 ounces (Wyatt was 8 lbs 10oz) despite being born a week later than Wyatt was. He lost some weight in the hospital but gained his weight back by his first doctor appointment. I was so determined to have breastfeeding work out for me this time. I nursed Luke almost every hour but he never seemed to get full and despite a rather large belly he was not very chubby. I got some help from a lactation consultant and things improved but he still ate all the time and wasn't putting on a great lot of weight. I was exhausted but we were convinced he was just a hungry boy and things would eventually get better.
When Luke was 3 weeks old I got a call from our pediatrician that his newborn screening had come back with elevated levels of IRT, which can indicate Cystic Fibrosis. We arranged for a second blood test to be done and at this point I still thought there was a chance this was all a fluke. After reading about CF online I completely broke down, I was so afraid he could have it and terrified my baby could die. The next week or so was a whirlwind. The second test came back again showing the high IRT and we went down to PCMC for what is called a sweat test. We later learned this was mostly a formality to diagnose him with CF and that the second test coming back had already sealed his fate.
After the sweat test we sat in the office at Primary's with a gene counselor who explained to us how our sweet baby boy could have been born with this scary disease. In order to have Cystic Fibrosis both of your parents have to carry a gene for it, and there is a 25% chance of both of them passing it on to you. There is a 50% chance if both your parents carry the gene you will be a carrier of the gene (only get the gene from one parent) and a 25% chance you will not get a CF gene from either parent.
During our meeting with the gene counselor we found our first ray of sunshine amid all of the gloom, Luke has a rare mutation that was currently the only one with a drug that treats the cause of CF and not just the symptoms. It is fairly new but we were told by the time he is two they thought he could start the drug and it would truly change his life and the lives of so many with CF.
Luke's first CF appointment was a bit overwhelming. There is a wide array of people in charge of keeping him healthy and appointments can and typically do last for hours as they each take turns coming in. We learned he would need to take pancreatic enzymes every time he eats to help him digest his food and that because he loses salt we would need to add salt to his bottles. We were told we would have to add extra formula when making his bottles and that any milk I pumped would need formula added to it to give him extra calories. He also started taking a liquid multivitamin since his body doesn't absorb vitamins and nutrients the way it should.
Life became pretty crazy and besides our immediate family we told no one about what was going on with Luke. I thought he was the sweetest most beautiful baby and the thought of someone thinking something was wrong with him pained me. Finally after another six weeks I decided it was time to talk about it. I posted the following to my Facebook page for friends and family to read:
"This is our Luke. He is 9 weeks old, loves bath time, and fart noises make him smile. Luke also has Cystic Fibrosis.
When Luke was three weeks old his newborn screening came back "indeterminate" for CF. At the time I had heard of CF before but had no idea what it was. We had never known anyone with it and since it's hereditary we were sure it was a fluke and his second test would come back normal. However, after another week and more tests we found out that our sweet tiny boy did indeed have a very big disease.
It took us some time to wrap our heads around it and to figure out what it all meant for Luke. We are still figuring it out. For this reason I didn't say anything to anyone other than immediate family. I didn't want this to define Luke, I wanted people to get to know him and then find out he also has CF.
So what is Cystic Fibrosis? Let me tell you that google is a scary thing and our doctors discouraged us from going there for info on CF. I unfortunately didn't know this and did google, and then spent the weekend before his first appointment thinking a lot of horrible things. So many advances have been made and not all of the internet reflects those advances. The CFF.org website is great and has more current information on what Cystic Fibrosis means for people today.
To put it simply, Luke has a faulty gene that prevents his cells from allowing salt to pass through correctly. This causes thick sticky mucus to build up in areas of his body, particularly his lungs, pancreas, and digestive tract. Having it in his lungs makes them the perfect place for germs to stick and can lead to life threatening lung infections. The problem with his pancreas is that the mucus blocks his natural enzymes making it hard for him to break down and absorb food.
We are so lucky they screen for this at birth instead of finding out after he had been in the hospital a few times with various lung infections. We are also incredibly lucky because Luke has a rare mutation of the CF gene that happens to be the only one they have a medication for that treats the cause and not just the symptoms. Currently it's only out for ages six and older but they are testing younger groups now and we are very hopeful by the time he is two he can start this life changing medication.
He is the most beautiful perfect baby and I know he is going to have a long and wonderful life. We wanted to tell family and friends about this because there are things you can do to help us keep him healthy. Being up to date on vaccinations, particularly the flu and whooping cough vaccines (given the time of year and the current outbreaks) is extremely important for babies in general, but especially so for Luke. Just like with any baby if you have a cold or any other contagious illness please don't touch or hold him. If you are going to hold him washing your hands or sanitizing them first is important. If you have any questions about Luke or cystic fibrosis in general please feel free to talk to Kyle or me, we would love to hear from you. We were going to stay home from holiday events because it is flu season and no one knew to be careful around him, but as long as he isn't sick we look forward to bringing him out so you can fall in love with him like we have."
The outpouring of love and encouragement from family and friends was truly amazing, and continues to be amazing. We are so blessed with wonderful people in our lives and it has made all the difference going through all of this. Luke is now almost six months old and he is doing so wonderfully. He has gained loads of weight and has the most delicious chunky thighs. I hate bragging, but he is truly the most wonderful baby ever. He cries if he is hungry or tired but otherwise is just a dream and smiles and flirts all the time. He loves his big brother Wyatt and has a special smile he saves just for him.
Life is pretty great right now and I feel so blessed with the husband and children I have been given. I hope to use my blog in the future to give you a glimpse into our lives and to help raise awareness for Cystic Fibrosis.
I think a good way to end this reeeaaally long post is with a barrage of adorable photos.
